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As luck would have it, I’ve been reading Annemarie Mol’s ‘The Logic of Care’. Just in time for the response to my NHS complaint about the events leading up to LB’s admittance to the unit to plink through the letter box.

These events are recounted on this blog in some detail but can be summarised as, er, a complete lack of care. Mol argues that the current emphasis in health (and social care) on choice is inadequate. This, too, is timely. Choice schmoice if you ask me. She’s concerned that an emphasis on choice leads to things becoming fixed and constrained; the circumstances in which we make our choices, the alternatives we choose from and so on. And choice is tied to individual responsibility. Instead we should pay attention to the actions of care. We should be doing things. Collective practices and attempts to make life more liveable.

Well I’m liking Mol’s interpretation largely. So, what about the response to our complaint? It has been investigated. Key people have been interviewed. The initial findings were further challenged and we have a detailed and considered letter. I don’t want to go into the details of this here as there are some outstanding issues, but I do want to draw attention to a phrase that is explicit and implicit throughout the letter; ‘the clinical care and support was satisfactory and of the standard of care that would be expected from the service’.

Now in Mol’s research, when people complained about their healthcare, they were not stories relating to a lack of choice, but experiences of neglect, of feeling abandoned. That nobody cared. Our experience of the period leading up to LB’s admittance to the unit was that health and social care didn’t care. The two professionals I howled down the phone to that Friday afternoon, after LB had punched his teacher in the face, didn’t care. But they weren’t the only non-carers. There was a structural and systemic lack of care across the health and social care board.

But we apparently experienced the ‘standard of care expected from the service’. Whose expected standard of care is the glaring question here? Based on what criteria? What we experienced was nothing that could be remotely daubed as “care”. And, as always, I’m left with my litmus test of wanting to ask the people involved during that period; ‘Can you just, for a moment, imagine if this was your child? Experiencing this level of “care”? What do you think you would feel?’

So, we’re left with a misplaced (or mis-used) choice agenda and a system in which the expected standard of care equals no care. Luckily for us, there was a supporting cast of dazzling carers; family, friends, Charlie’s Angels, head teacher, school nurse, cake-makers, neighbours, twitter buds, colleagues, and random strangers. That’s what care looks like. Collective attempts to make lives more liveable.

Yesterday I got home about 7pm. I rang the unit to ask if LB wanted me to visit that evening or today. I don’t feel I have to see him every day, but I like him to know that we’re around.

The staff passed LB the phone and I asked him the question.

“Today“, he said, straightaway.
“Are you sure?” I asked,one eye on a bottle of wine chilling in the fridge.
“Today, Mum, today“, was the firm answer.

When I turned up at the unit, the staff were surprised to see me. He’d given the phone back to them and said I wasn’t coming. Funny. Or is it?

The unit team have produced a communication care plan for LB which is stuck on his bedroom wall. The first objective is;

The family need to phone if they want to come. If LB doesn’t want them to come, staff to suggest to try again on a different day.

Mmmm.

The Department of Health only days ago published a joint statement with various partners about post-Winterbourne care for learning disabled people, which included a recognition of the learning disabled people in other NHS-funded hospital care. A commitment was made in the Winterbourne View concordat “to ensure that by 1 June they will all have had their care reviewed and a personal care plan developed, built around their particular needs, taking into account the views of their family carers”. [italics added]

Now, these things (as usual) ain’t rocket science, but I would have thought LB’s communication care plan could have started with any one of a billion objectives that would support and facilitate his communication with others. Starting with this one is kind of problematic to me, as it sets us up as a problem, or an obstruction to LB’s development. An issue that emerged in the very early unit days. Given that only a few months ago, LB was a typical teenager, living with his family, I’m not sure what sense he makes of it, which may be why he told the staff I wasn’t coming, having told me I should. The communication plan is on fire, clearly.

But then, as with most of these things, there is a helluva lot of talking the talk, but little walking the walk. It doesn’t matter what grand statements are made at the top, if they ain’t going to translate into practice. And the irony is, I/we/carers are forced to become ‘problematic’ to try to get some walking done.

You know that saying; that things can’t get worse? Well that’s turning out to be a load of old codswallop. After the whole CPA meeting surprise (see yesterday’s cheeky little number for details) and, as yet, no sniff of what the future might hold for LB (Don’t. Just don’t even mention support), I went to visit him yesterday evening. He was in bed, dozing. With a bitten swollen tongue. Signs of a seizure. Or size of an elephant it might well have been.

The bitten tongue had been noted and Bonjela on order. The seizure dimension overlooked. LB’s seizures have always worried the pants off me. Not least because it took about four ‘in your face’ tonic clonic epics before the docs would even entertain the idea that he might have epilepsy. We were tripping over that old ‘he’s got to learn to manage his stress/star charts anyone?’ chestnut (a.k.a. the learning disability trump card) for months.

The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.

Crawled back to bed this morning, exhausted, and was kind of slumbering when the phone rang. It was Vicki, LB’s teacher. Charlie’s Angels were going to visit him this afternoon and she’d just had a call from a nurse at the unit. Could they talk about LB returning to school?

WOW. WOW. WOW. That.is.amazing. Back to school????

The highs and lows of the last few weeks are indescribable. Three sections in as many minutes and now back to school??? Fanbloodytastic. Vicki told the nurse a bit about LB when he was Laughing boy, before he became withdrawn, distressed and eventually aggressive. They’re going to discuss a return to school after Easter.

I rang the nurse. They’d had the team meeting yesterday, done their baseline assessment over the past five days and will now start to get to the root of the problem. In the meantime the team think he needs to get active again, rather lying around all day.

I’m beginning to seriously love that unit.

Time for me to crack on with work now. I’ve got some cakes to bake later. And a load of other stuff to catch up with. Happier times indeedy.

In another twist you couldn’t make up, LB got a letter today from Oxfordshire County Council; he has to pay £63.45 a week towards his care, under the Fairer Charging Scheme. I called the guy who explained what it meant but I was too tired to take it in. We left it that LB would pay the backlog that had built up since November when he entered adult non services.

I mentioned it to Rich when he came in from work.

“What care???” he asked, baffled.

“Er. Good point. I dunno, I’ll ring him back and ask him.”

In an almost comedic conversation, cheerful chappy at the Council said that LB has to pay the County Council this contribution towards the cost of his care because he gets a direct payment of £151 per week. This is sitting in a bank account. The fact that we ain’t been able to buy any care is irrelevant. Can we use the direct payments to pay the contribution towards the non care? [I know, my brain nearly melted at this point]. No, that’s not allowed.

In effect LB will be paying the Council for the care we’ve provided.

Direct payments that aren’t used will eventually be reclaimed, and then LB can ask to have the money reimbursed. Now my brain is pretty foggy at the moment, but this whole process is beginning to whiff a little bit.

Update: Payment is being delayed while chappy speaks to the direct payments team about reclaiming the direct payments. This personalisation business is a lark. No care just aggravation.

One of my birthday presents was a bell so I could ring for ‘service’ (wine, newspaper, clean towel, etc) when in the bath. I know. It’s a laugh riot in our gaff. On Sunday, LB was about to get in the bath when I realised the full potential of the new, shiny bell. LB loves baths but has quite a way to go to mastering effective tap control (heat and quantity). We run it for him and leave him to soak. Trouble is, it’s tricky to decipher general chatter from a help request (or outright alarm). This means he doesn’t get much privacy. Dinging the bell could resolve this.

“So LB, if you want anything ding the bell. Like this…” DING!
“Yes Mum.”
“Ok? If the water gets too cold or you need anything, just ding.”
“Yes Mum.”
“Ok, I’m going in the other room.”
“Yes Mum.”DING!
“Wow. That was quick. What do you want?”
“I love Irish lorries Mum.”

Ok. I’ve been thinking about this for a while now. But only in short bursts. I thought if I start to document these thoughts, it may a) give me a kick up the backside to explore it more fully b) contribute to discussion/different ways of engaging with young learning disabled people and c) maybe get some tips, experiences and links.

So, LB is 18 in a few weeks. He is very funny, hard working and sensible (in an unusual way) with some serious interests around transport, recycling and justice. “Transition” so far has been pretty shite as I’ve documented. The future is not looking bright.

The facts as I’ve gleaned them (not easy); He has one more full year at school after this one. After that, he will be entitled to direct payments to create support for him. What this means is not clear. There’s a chance of a further year at a local college to learn (more) life skills. Given that his sixth form are currently doing a cracking full on job of teaching life skills, I’m not sure that there is much point in an additional year. Well other than to occupy his time. After that, it’s day centres (shudder) or a life of being taken into town to go to the cinema, bowling or hanging out at home with a paid carer.

The fledgling plan..

To set up a small social enterprise scheme; get a loan, buy a small van, a mobile industrial shredder, employ a co-ordinator and run an odd job business. The odd jobbers. The idea is to draw on the strengths of LB and other young people and celebrate diversity/eccentricity. LB is an attention to detail kind of dude when pointed in the right direction and encouraged to stay there. Other young people I know have an infectious joy in meeting people (though not always joyful to their parents) and interacting, strength, humour, an ability to hang out cheerfully and other skills. The plan is to create a community presence where the odd jobbers become known about locally. People, and local businesses, enjoy the service they offer on a social, as well as financial, level. Driving round, collecting shredding, or bits for the dump, small deliveries and so on. Creating employment (for however many hours a week) and the associated benefits (productivity, achievement, activity, purpose, structure, pay and a social life) which is priceless.

There are enterprises that are doing similar type work across the country. I was pointed in the direction of Props who offer brilliant opportunities for young people in the Bristol area. But there are layers of hoops and bureaucracy to negotiate as local authorities interpret what direct payments can be spent on very differently. We had a taste of this when LB went on a “summer holiday” with a few other young men, funded through direct payments, only to come back with an extensive learning log. Oxfordshire county council insist learning outcomes are attached to funding. Props have had to create an accredited course for their enterprise. Choice and autonomy within a personalisation agenda? Forget it in practice.

These are early thoughts. It may be a vague, unattainable, undoable daydream. [Like my decluttering intentions..cough cough]. I’ve no idea how it could work in practice. But it feels better to think in terms of action. And involvement. Rather than just letting things pass by.

This morning was LB’s end of year assembly. A time of celebrating and sobbing. This year kicked off with Shine by Gary Barlow. A couple of young girls opened brilliantly with the first line or so then everyone else kicked in with a range of voices, shouts, words and signs. Everyone was rummaging around for tissues within seconds.

It’s the same every year.

I remember one year, when LB was about four, I’d just bought a video camera which I was really looking forward to using. The kids were brought on to the stage dressed in colourful tunics (for the ’round the world’ theme) and stood in a semi circle. I managed to locate LB in my viewfinder, with his angelic little face, pressed record and then they opened with “What aWonderful World“. The rest of the footage is the floor, feet and chair legs and about 10 seconds of LB and his classmates singing and signing;

I hear babies cry, I watch them grow,You know their gonna learnA whole lot more than I’ll never know…

Not a dry eye in the house.

I think some of the emotion is about seeing such a diverse group of kids performing their socks off but it’s also seeing the staff interacting with them. They are an exceptional bunch who offer unending support and encouragement. In this setting, unlike most others, our kids have no limits.